Mapping Fragility Fracture Network hip fracture registries
Overview
In Bone and Joint health we led two grants funded by the EHDEN project based in the European Union. EHDEN is a community of people with an interest in using health information into a user-friendly format that keeps data private, but enables the data to be used anonymously for research and projects looking at what happens to people, for example after they have an operation or hospital stay.
Firstly, we wanted to convert local Barts Health hospital data into this research-ready format.
Secondly, we wanted to work with the National Hip Fracture Registry (NHFD) to convert a snapshot of national information about patients who have had a hip fracture into this user friendly version too.
What we found
In both grants we worked alongside data specialists and local experts to identify how the healthcare information was structured and how to convert this information into a ‘common data format’ (OMOP common data model). Once converted, the new data had to pass some quality assurance checks (using anonymous data) that enabled EHDEN to identify if the data was ready to use. Both of these projects ran over 3 years, and both projects were successful as being approved as a European data partner within the EHDEN network for future research.
In the Barts Health project, we have now been able use this data format locally to run local projects as well as work with national and international partners to run studies. This has been undertaken whilst the data never leaves its secure location, and is used in an anonymised format to enable the greatest level of privacy for patients.
In the NHFD project, we undertook an international project to assist other hip fracture registries around the world to convert into the same common data format to run future research across the world. So far, 3 data partners have converted with 2 more in process, with this work still ongoing.
Why it matters
We have used both these new forms of healthcare information to guide local investigations into outcomes after medical treatment and to inform national guidance to government within national pieces of work. This has enabled us to represent our local population that may often not be well represented in research.
Locally, we have run studies into
- what happens after patients come to hospital with a hand fracture (scaphoid fracture)
- what happens when pregnant women have an injury (ranging from a broken bone to multiple injuries in a severe trauma) and come to our hospitals for treatment
Nationally and internationally, we have been a partner in studies looking at
- trends in the use of antibiotics in hospital in adults and children
- trends in the use of very expensive (high cost) medicines in hospital
- trends in the use of surgery to treat common hand conditions such as carpal tunnel syndrome
Outputs and reach
The work investigating the use of antibiotics in our hospitals has shown that children did not seem to suffer the tendon complications of using a type of antibiotics (fluoroquinolones) that is seen in adults. We are working with our team in QMUL to make this information available to our local community and patients to enable them to make decisions about treatment.
Following this work, we have gained three further grants related to using these research ready datasets:
- Along with other UK data partners, we were funded by Innovate UK to undertake further work to develop a national network of hospitals who could work together for future projects.
- We were chosen to be a data partner in the HDRUK charity led project HERON, that is now in its second year. In year one, the grant focussed on generating a national network of data partners. We now work with the MHRA, the UK government team that monitors the use of medications and medical devices in the UK and have been able to represent our patients in national studies investigating the use of antibiotics and high cost medicines. In year 2 of the project that started in Autumn 2025, we will lead research into the use of medicines and medical devices used to treat heart disease that is funded by the British Heart Foundation.
- We have also been awarded a programme grant from NIHR to investigate the use of medical devices using this research ready format of data. This is due to begin in Summer 2026 for 3 years
These grants have enabled us to grow our team with secondments of data scientists and programmers from Barts Health, Barts Life Sciences and QMUL.
Key publications:
A Regulatory Perspective on a UK Federated Data Network for Medicines and Medical Devices: Lessons from a ‘Study-A-Thon’ Helen P Booth John Connelly, Daniel Dedman, Katherine Donegan, Alison Cave. PMID: 40830696
Time series methods to assess the impact of regulatory action: a study of UK primary care and hospital data on the use of fluoroquinolones. Guo Y, Raventos B, Catala M, Elhussein L, Lopez-Guell K, Tan EH, Prats-Uribe A, Dedman D, Man WY, Omulo H, delmestri A, Lane JCE, Rahman Y, Griffin XL, Gao C, Cole C, Batty P, Connelly J, Booth H, Alison C, Donegan K, Prieto-Alhambra D, Burn E, Jodicke AM. Pharmacoepidemiol Drug Saf. 2024 Oct;33(10):e70022. doi: 10.1002/pds.70022.
With more studies to come!
Who was involved
This project was a joint collaboration between Bone and Joint Health, Barts Health, Barts Life Sciences and the Precision Medicine Platform. Our leaders in Bone and Joint health were Professor Xavier Griffin, Miss Jennifer Lane and Mr Usama Rahman. Miss Jennifer Lane leads Barts Health within the HERON network and in the NIHR PfGAR grant. We would like to thank Hiba Junaid (Barts Life Sciences), Ben Eaton (Barts Health), Ruzena Uddin (Barts Life Sciences), Surj Janjuha (Barts Health), Charles Gutteridge (Barts Health) and Rafael Henkin (QMUL) for their work in these projects.